Chemo Before and After Surgery ??? IBC

Taineg1

Chemo Before and After Surgery ??? IBC

Taineg1

My pathologist results showed  that I still had lymphovascular invasion after 4 A/C dose dense and 12 taxol Chemotherapy has anyone with IBC had more Chemo after Surgery? Also I asked for imaging test and I was told I have to wait a year that it was too soon. anyone out here with similar experiences or suggestions ??? 

Kicks

I had 4 DD A/C neoadjuvant (before surgery) and 12 Taxol adjuvant (after surgery).   Most will do 2 different chemos neoadjuvant but not 1 neoadjuvant and 1 adjuvant as I did. 

As when I was in TX, I did not find anyone saying they were doing what I was, I asked my chemo Dr and surgeon about the differences.  What they told me made sense to me.  Basically, they said that because of the nature of IBC, chemo has to be done first to get the area to form a 'lump' with margins and shrink so the surgeon has a good chance of getting it out.  Then after surgery, hit it with chemo again to get any 'hiding' cells that were not gotten.  (It is impossible to remove every breast cell with surgery.)  Then rads as another backup.  So - in other words, get it to where it can be operated on, remove the 'Monster', then there will only be a few/if any cells left somewhere in the body to 'clean up' if necessary with the second chemo.  To me, this seems the logical way to go instead of using all the 'weapons' first as it seems is done with doing 2 neoadjuvants.  I did have 19 of 19 nodes removed positive and the tumor was quite large with gooc margins but 'it' was removed and the next chemo only had no or very small areas to 'kill' instead of trying to kill all/large areas of it with a second chemo before surgery so the path. comes back clear of IBC. 

I definately am not educated medical personel.  My thoughts are mine (and probably mine alone) based on my personal experiences and the information I have gained.  My TX plan worked GREAT for me and am so thankful for ALL my Drs but we are each so unique as are our Drs.  There is no 'One Size Fits All'!  I am 4+ yrs out of TX (will be on Femara/letrozole 'forever') and as far as I know today still NED.  'Tomorrow' - who knows - anything is possible.

Oh yeah - I have no full body scans since.  I have had 2 bone scans because to be on the safe side, my PA wanted them done to be sure it was just my advancing arthritis in upper back that was causing more pain - it is.  I've had 2 MRIs (1 head, 1 abdominal) to be on the safe side again with 'issues'.  Had a colonoscopy, too, again to be sure.  I do not want to just be getting scans done - don't like the radiation unless there is a good reason.  I've had 4 surgeries (2 cataracts, wrist, detached retina) done since end of TX and with all of them, the hospital protocol calls for a chest X-ray (and an EKG - fine) before ANY surgery.  I refused and had to talk with Drs and it was 'waived' for me when I explained why I did not want more radiation to chest area unless ABSOLUTELY nessecary.  IF I hadn't been waived, I would have done it as these surgeries were totally necessary for my QOL.  

(A short after thought - I am a Veteran - Army- and in MY case I could not have asked for better care through my local VA facilty. I was immediately outsourced the day I saw my VA PA with my IBC and throughout TX.  When my retina detached, I was immediately outsourced to the local Eye Institute.  Certainly, there are issues that have to be corrected but they need to be corrected - but don't 'throw the baby out in the wash' or assume that ALL Veterans are not getting great/appropriate care.  Hubby os Ret. Navy (with disabilities) and gets his time appropriate/needed care also.)

WinningSoFar

I did 3 rounds Taxol before surgery which greatly reduced the tumor size to almost nothing.  After surgery and after a scan that showed hypermetabolic activity in my lymph nodes, I've had another 3 rounds of Taxol.  I am now NED (yeah!) and will have one more round and then I think I'll quit until more activity shows up. 

amarantha

Dear Trainig, I am glad you asked this question, and Kicks I am very glad you shared your experience on this topic.  I asked if I would get more chemo after my recent surgery, and the answer was no, even though the pathological report was a little worisome.  I'm looking forward to hearing more of people's stories on this subject.

Nel138281

From my initial apt with Onc, chemo post surgery was part of the plan.  I had chemo for 12 weeks (taxol and sorry forget what the combo was) a month off, then surgery, a month off and then chemo again, I believe adryiomicin cytoxin (sp???) and then radiation.  And because I am her2+ Herceptin, 13 tx (triple dosed do really 52 tx).   And my path report was clean after surgery.  I go to dana farber.   Chemo post surgery for IBC is pretty standard.   I had one scan post surgery -just to be on the safe side.  No others unless I had symptoms of some sort.

 

Taineg1

I have an appointment with my Oncol on Monday I will ask about the LVI again . Anyone knows about unfinished Radiation Therapy ????? I was not able to complete treatment due to Pleural and Pericardial effusion .... 

Taineg1

When I first was diagnosed I was told IBC only have 1 type of treatment when I asked for a second opinion .. Kicks and Nel got Chemo post surgery and Im also noticing Amarantha and alexgr didn't get the dose dense recommended for IBC ANYONE WITH BRCA MUTATION? 

WinningSoFar

I think I did get dense dose Abraxane, as I understand it.  One round or cycle = 3 weekly infusions + 1 week off.

I did the testing and do not have BRCA1 or 2. 

amarantha

Hi Taineg1 - I actually did get somewhat dose dense during the last six weeks : I had Cisplatine + taxol on week 1, taxol on week 2, then one week off. Lather, rinse repeat, concurrent with radiation for the last five weeks. I would certainly have been game to try additional chemo. In any case there was not much reaction to the chemo I did have.  

Sherlocked

hi - I had AC and Taxol prior to surgery. I was told from the beginning that if there were any residual cells I would have more chemo after surgery, but luckily the report showed no residual cells after my bmx. I did receive close to a year of Herceptin post surgically though to help prevent recurrence.

Initially they said chemo would be from 4-6 months, and it ended up being 7. I showed early and rapid response to chemo - I did not have dense breast tissue in the least and so by 3 weeks I could actually feel the outline of the cancer and see it shrink. Before I was done with AC it was gone - it was very easy to monitor because of the type of breast tissue I had. I did still have the pinkness for a bit longer, into the start of Taxol. I suspect that because my response was obvious and I was tolerating it ok, they kept up with pre-surg therapy in the hopes of completely eradicating it prior to surgery, which is what happened. It's been coming up on 4 yrs with no recurrence so far.

But, the expectation at the beginning was that more likely than not, chemo would have continued after surgery.